Yellow House

The Role of Speech Therapy in East Africa

“This is the finest place I have known… an illusive place where nothing is as it seems… I am mesmerized”
David Livingstone 1866

East Africa is one of those regions that you already know about. Stanley met Livingstone here. Freddy Mercury was born here. Barack Obama has relatives here. You’ve read Kuki Gallmann’s “I dreamed of Africa” or seen Meryl Steep in “Out of Africa.” Maybe you loved “Gorillas in the Mist” or “The Last King of Scotland.” East Africa is in the media and it’s in literature and it’s everything or nothing depending on who is writing the story. It’s blessed with abundance or poverty depending on your point of view.

Tanzania, Uganda and Kenya are the three major players in the East African region with Burundi and Rwanda the newest members of the community. The countries are united as a relatively stable tourist destination (amongst other things) and it’s a place where people come to view vast panoramas, witness the migration of animals and experience the huge sky hung with sun, moon and stars like toys on a giant crib mobile. The region is also home to approximately thirteen speech therapists whose jobs seem to cover the gamut of services possible for our field. This article was written because of the continued interest expressed to our group by American based speech therapists who want to know who we are, what we do and how to join us.

Who are we and what do we do here?
To give you an idea about the types of work currently being done by speech therapists in East Africa, the following vignettes describe the varied jobs of six speech therapists based in Kenya and Uganda (One Kenya, one expatriate and four with Voluntary Services Overseas).

Fiona Bell & Sarah Bagnall

Almost a decade in the making February saw the beginning of a three year degree program granting a Bachelor of Science in Speech Language Therapy at Makarere University in Kampala. Oft looked at as one of the continent’s leading universities, speech therapy students will graduate with their degrees from Makarere’s school of Medicine. Thirteen students make up the first cohort and graduate late 2010. Because of the newness of the program and field all applicants were required to already have a related degree or diploma (for example there are occupational therapists, special education teachers etc) and go through an interview process prior to acceptance. Twenty two students were granted admission but due to the last minute fee hike by the university only thirteen were able to generate sufficient funds. It costs approximately $900 per school term with the total course costing $5400. Given that students are expected to attend full-time for three years money is expected to be an issue. The government has agreed to subsidize fees but not for this initial class.

The Makarere University program is currently being run by Voluntary Service Overseas (VSO) speech therapists Sarah Bagnall and Fiona Bell with the support of VSO Uganda and Makarere’s own faculty. Based out of Mulago Hospital in Kampala, Uganda, Sarah and Fiona write lesson plans, teach around four courses each term and supervise clinic. The problem based learning curriculum was adapted from a speech therapy program in Trinidad and serves to provides students with all the foundation courses as well as give them opportunity to apply the information as they learn it. This provides a challenge for students who are a used to a much more rote memorization type of education.

Sarah and Fiona have an incredibly large work load but also continue with community outreach and to see outpatients as needed. As the curriculum diversifies to cover more specialized topics (feeding and swallowing, voice disorders) the plan is to have guest lecturers come for a month and teach on these subjects. It should be noted that while Mulago Hospital is 1500 bed hospital and Uganda’s largest national teaching, referral and research hospital at this time there is no inpatient speech therapy service. Aside from the lack of staff to fill these positions Sarah and Fiona report that work will have to be done to generate awareness within the medical field about our discipline and the services we can provide in relation to acute care.

In Kenya, whilst there has been talk of starting a degree granting program for the last 20 years at this time it is still only talk. Kenyatta University in Nairobi may be willing to take on a program but it is a long way from accepting their first class. Steps are being taken however as last September the Kenya Institute of Special Education (KISE) provided funds to pay for the speech therapy training of Grace Macharia at the University of Reading in the United Kingdom. Grace is an exceptionally talented special education teacher who is bonded to return to Kenya at the completion of her degree and practice in Kenya for at least two years.

Lynne Lenten

Lynne is Dutch educated speech therapist who came to Kenya for love and negotiated the wads of paperwork required to get an expatriate work permit. Since getting that very expensive and hard to come by piece of paper she has started her own private business. Lynne typically sees children for one-on-one or small group therapy in their home or at their school. By her report she sees individuals with a variety of diagnoses including autism spectrum disorder, developmental delays, Down syndrome, cerebral palsy, specific language impairment, articulation issues and velopharyngeal insufficiency. Clients are seen one to three times week and individual 30-45 minute sessions of speech therapy cost between $20 and $35. This cost alone excludes services many of the needier children but for the four speech therapists that provide direct services it is a fact that whether you are at a hospital or running your own practice the bulk of your clients must be able to meet the fees. Lynne also collaborates extensively with the schools and parents who hire her, and is frequently called upon to come in and do trainings.

In late 2007 Gertrude’s Children’s Hospital also started a weekly multi-disciplinary child development clinic. Lynne is responsible for the speech therapy assessment portion of the evaluation though reportedly the multi-disciplinary piece hasn’t really taken off just yet. Lynne also volunteers with Operation Smile on their annual Kenya visit. Since last year Lynne has been providing ongoing speech therapy for one of their 22 year old female patients who received a sphincter surgery for velopharyngeal insufficiency.

Michael Terry

Mike is a British trained speech therapist who was recruited by VSO to work for the Nairobi branch of the Association of Physically Disabled Kenya (APDK). Founded in 1958 APDK is a well established organization that works across Kenya providing rehabilitation and integration services in a variety of settings. Mike’s primary role is to train other rehabilitation health care providers to assess and treat speech and language difficulties in children who are referred to APDK. Minor difficulties are rarely referred in Kenya so children who are seen by this organization tend to have significant issues sometimes related to factors such as cerebral malaria, hydrocephaly or multiple disabilities. Mike works with his colleagues encouraging them to consider the less visible issues relating to speech and language disabilities as they provide outreach in Makuru slum on the outskirts of Nairobi. Home to about half a million people APDK staff visit families in Makuru slum, evaluating children in their homes and providing recommendations for appropriate educational placement as well as therapy strategies for caregivers. Mike also works in consultation with a small day care initiated by parents and community members of Makuru in 2003. The children enrolled tend to have cerebral palsy or significant cognitive disabilities

Emma Shah

Emma is East Africa’s one adult focused speech therapist! She works part time at 2 major hospitals seeing patients who are referred by their doctors. Emma’s in-patient and out-patient caseload covers adult acquired disorders such as aphasia, dysarthria, dysphagia, voice, stuttering, as well as tracheostomy management. In addition she runs a monthly Laryngectomy group, a stuttering support group and an aphasia support group.
Emma reports that her biggest frustration is that lack of neurological rehabilitation unit in Kenya (South Africa is the nearest) so that even basic things like not feeding patients lying down is a problem (even in ICU). There are plans to start a ‘state of the art facility’ but there is little money for equipping the unit. Emma reports that there is virtually no team working concept among hospital based therapists although the doctors she works with can be very supportive.
For private and hospital based therapists the patients being seen are of course the slim minority that can afford to pay for the services. Whilst there are government schools and centers for children with disabilities they rarely have money in the budget for a speech therapist.

My work

I work on a four year European Union funded project entitled “Children with Disabilities Empowerment Project” (CDEP) of which speech therapy is only one strand. When I was brought on in January 2008 I was given two months to get to know how my district Educational Assessment Resource Centre (EARC) worked and write a week long speech therapy course to train forty EARC staff and/or special education teachers from across Kenya. Those forty participants then went back to their twenty districts and each team of two was responsible for replicating the training to twenty teachers. In a nutshell, in addition to actual training, I support others training on speech therapy techniques and I make classroom follow-ups to support the teachers attempt to put some of the theory into action. We focus on ‘functional communication’ and I encourage teachers to support spoken words with written words, pictures and signs in a whole language type approach.

The Need

To give you a context of the need for speech therapists Kenya alone has an estimated 1.8 million individuals with disabilities under the age of 19 only 27,000 who are currently in school. Whilst there is a referral, assessment and school placement system in place, the reality and the quality of services within the system vary widely. Jochmann (2006) estimated 1.3 million Ugandans had communication or feeding disorders.

Supporting Organizations

Though there are many non-government organizations working in the field of disability in the region (Handicapped International, Leonard Cheshire etc.), Special Education Professionals (SEP) www.sepkenya.com is a home grown organization which has always been populated with Kenyan based speech therapists. Started in 1990 as a support group, in 1998 they started free monthly consultation days at Gertrude’s Children’s Hospitals. There are currently 25 volunteer member speech therapists, occupational therapists, special needs teachers, and an educational psychologist. Referrals tend to be by word-of-mouth. A part from free assessments and SEP members regularly run trainings in the community, at schools and with partnering organizations. They also visit schools and other centers for individuals with disabilities to provide education, support and recommendations.

I would be remiss not to mention also the work of the Autism Society of Kenya who has developed a special diet-based program for the several classrooms of children with Autism at City Primary School in Nairobi. Started by Felicity Nyambura, a grandmother of a child with autism who was shocked at the lack of support her grandchild was receiving and the lack of information available in Kenya, she promotes awareness about Autism nationwide.

The Issue of Languages

East Africa is multi-lingual. Throughout Tanzania, Uganda and Kenya it is common for classroom teachers to be working in three or more languages. I encourage special education teachers to work in local vernacular in their classrooms if the group of children is all from the same region, but in some areas where children come from a mix of ethnic/tribal backgrounds the teacher may not even speak a child’s mother tongue. There is definitely no one size fits all answer to the issues of language as the situation varies regionally.

As a volunteer in Tanzania a working knowledge of Swahili would be imperative, in Uganda it’s essential to know some Luganda. In Kenya while some knowledge of Swahili goes a long way towards begin accepted by community members beyond a few social phrases most of our work happens in English. University training is done in English so anytime you are working with teachers there is an expectation that it will be done in that language.

Differences in the work…

One evening I arrived home from work and my newly arrived housemate looked at me and said, “So this is what you do?” My face was covered in dirt so thick it looked like I was wearing badly applied makeup, I was sunburned, my hair looked like a shrubbery and I was completely dazed. I’d spent the day on the back of a motorbike visiting one rural school after the next in the back of beyond. At each school I was expected to observe a lesson then sit with the teacher and point out all the great things they were doing as well as make some recommendations and schedule a follow-up session. School visits also include mandatory tours of the facility, introductions to anyone who passes by and before and after meetings with the school principal. How is my work here different? I never had a day like that in the States.

Another time I was in a district about three hours from my home and we once again took a motorbike to a rural family home. As we waited under the tree in the family compound mothers started arriving with their little ones, unrolling their scarves for the children to lie on as the occupational therapist and I spent the next couple of hours doing a therapeutic play group with the parents. I never had a day like that in the States.

But generally the difference between the work here and the work in the United States all depends on the work that you do. Here I find I spend a lot more time at schools that have no materials. Not a few books on an old bookshelf as you might find in some low-resource neighborhoods in the States, but no bookshelf. Some schools literally have little more than mud walls, a tin ceiling and some wooden seats for the children to sit on. This forces me to be extremely creative in making recommendations for incorporating language techniques into the classroom routine! In these situations I definitely wonder if speech and language is perhaps their greatest need.

Another difference is the number of times you are likely to see a patient. If I see individual children at the hospital I find that follow-up is difficult for many families. Families might have come in for an initial evaluation but due to transport costs they will not be able to afford to return for treatment even if the actual therapy is free. Overall, therapists find them selves doing a lot more training of parents and caregivers and working to help people just understand the basic issues related to a child’s disability. People still want to believe there is a magic switch that we can hit to get their children to talk. It’s difficult to get people to change their behaviors to meet the needs of the child rather than expecting the child to do as they’re told.

Working in this part of the world has its ups and downs like any job. I personally think the highs are much higher and the lows are much lower. I frequently get frustrated when teachers are two hours late for a training and say “Oh Bea, it’s African time” as a way of apology. I often throw up my hands in disgust at the poor attitudes of adults who should know better. There was the teacher that blocked a special needs child from her classroom door because she didn’t “work with kids like that”, or the teacher who mocked a child with a stutter before a class of sixty peers. It gives me heartache to hear of adults turning a blind eye when a child with a physical disability is being kicked by able bodied peers on a playground. Or of principals that expel children with epilepsy because the other parents believe it’s contagious and threaten to remove their child from the school. But, but, on the other hand there are parents who will wait hours to see you because they heard you were there, and there are caregivers who have carried a sixty pound child on their back for a forty-five minute walk and then made a two hour bus journey so you could help their child. There are bus drivers who take their vehicles out of their way down a bumpy dirt alley to pick up a patient who has had a stroke and can no longer walk so well, there are teachers who create children’s books from memory using markers and crayons because they don’t have any. I worked with teachers in Chicago who didn’t crack a smile for a whole year and here where we work with nothing, no books, no materials, nothing, teachers are nearly always willing to give it a try. My colleagues are always welcoming and even though they sometimes look at me as if I’ve completely lost their marbles, when I return to their schools or clinics or assessment centers I can usually see an attempt at implementation.

As my own contract wraps up later this year and I begin the process of documenting my work including data on observable behavior changes I feel like I haven’t even begun to accomplish my goals. There are so many more parents, children and teachers to work with. And given my time here, did I even do anything? How can you tell? After much thought on these questions I’ve concluded that I don’t think you can ever record the true impact of your words and actions. Much of what we do is sow seeds, ideas and awareness. Perhaps all anyone heard was “we should be nice to children.” Perhaps they learned to use a picture schedule in their autism room or just to stop calling the children “stupid.” Of course maybe no-one was listening to that because they were waiting for me to suggest blowing feathers and balls of paper through straws and they just wanted their “speech kit” full of whistles and balloons which was administered by the Ministry of Education several years ago. It’s hard to tell who was paying attention, but perhaps one person got it and that one person will make the difference for one child. And perhaps that’s enough.

Getting Involved:

September 9-13, 2008 East Africa’s speech therapists will be coming together for their second annual conference. Dr. Kate Gottfred, Dr. Laura Justice and Dr. Joan Kadeverak will all be attending as guest lecturers. If you are interested in attending or more information please email me at bea.staley@gmail.com

Volunteering with Voluntary Services Overseas (VSO)
If you are interested in more information about volunteering with VSO please contact them at www.vsoint.org. Americans are recruited through VSO’s Canadian office in Ottawa. Volunteers travel to Ottawa for an assessment day as well as two intensive trainings designed to prepare you for your time overseas. All of VSO’s positions are ‘skill sharing’ or training positions in an effort to create a sustainable impact once the volunteer has left. At the time of writing 2 year placements were available at both the Kenya Institute of Special Education located in Kassarani about 15km north of Nairobi and Makarere University in Kampala, Uganda. Personally I think both jobs are really interesting and varied, have great local teams and are in urban settings with great nightlife. VSO volunteers receive housing and monthly stipend of $200-300 depending on the country. Most volunteers find the stipend adequately covers all basic living costs, but it’s harder if you are in a big city like Nairobi or Kampala where there are more tempting diversions.

Short Term Volunteering
If you are interested in volunteering your time or expertise at Makarere University on a more short-term basis please email speechuganda@yahoo.com
If you are interested in volunteering in Kenya please contact the author at bea.staley@gmail.com
If you are an experienced therapist who has been involved in setting up a training course in a country where there was previously no SLP training we would love to hear from you.

Donations
Organizations like Leap Learning Systems and Linguisystems have been generous in their donation of texts and children’s books for our East African programming. Text book or other material donations continue to be most appreciated. Please send them to:

Speech Therapy Program
VSO Uganda
PO Box 2831
Kampala
Uganda